UPPSALA UNIVERSITET
Institutionen för neurovetenskap Fysioterapeutprogrammet
Examensarbete 15 poäng, grundnivå
“Once you have the physical activity started. Then you can begin to feel that you are not in this prison anymore”.
Refugee experience of post-traumatic stress physiotherapy
” När du har den fysiska aktiviteten på gång då kan du börja känna av att du inte är i det där fängelset”.
Flyktingars upplevelse av posttraumatisk stress-fysioterapi
Författare:
Christopher Boyer Bartlomiej Sandberg Redovisad: januari 2020
Handledare:
Elisabeth Anens,
Universitetsadjunkt
Abstract Background
There is limited research and guidelines regarding physiotherapy as a treatment approach for post-traumatic stress (PTS). Refugee experience of physiotherapy interventions is hoped to contribute to awareness of the subject and to give insight into this developing field of the profession.
Purpose
The purpose of the study was to investigate and describe refugees experience of post- traumatic stress physiotherapy. The study was interested in both refugee experience of treatment itself and of possible effects.
Design and Method
Qualitative explorative design. The study was based on five semi-structured interviews. A qualitative, content analysis was used to process the data.
Results
The analysis showed that the refugees faced many physical and psychological barriers to treatment, especially relating to pain and somatisation, however they were able to experience increased bodily comfort during treatment itself. The relationship to
physiotherapist, the psychological impact of the treatment environment and other social factors were also described as important to experience.
Physiotherapy was described as positively affecting patient outcomes both in physical and mental health, despite certain uncontrollable/unmanageable symptoms making this
difficult. The refugees were able to achieve generalisation of physiotherapy into their day-to- day life enabling them to self-manage to some extent and feel liberated from PTS symptoms.
Conclusion
The study agrees with the available literature on the effectiveness of treating refugee patients suffering from post-traumatic stress with physiotherapy, not just to improve physical health outcomes but even to give holistic improvements.
Keywords
Post-traumatic stress, refugee, physiotherapy, experiences
Abstrakt Bakgrund
Det finns begränsad forskning och riktlinjer gällande fysioterapeutisk behandling mot post- traumatisk stress (PTS). Flyktingars upplevelse av fysioterapeutisk behandling förväntas sprida kunskap och bidra till insikt i denna del av det fysioterapeutiska området som fortfarande är under utveckling.
Syfte
Syftet av studien var att utforska och beskriva flyktingars upplevelse av posttraumatisk stress-fysioterapi. Studiens intresse var av flyktingars upplevelse och effekt av den fysioterapeutiska behandlingen.
Design och Metod
Studien är av kvalitativ utforskande design baserat på användandet av 5 semi-strukturerade intervjuer. En kvalitativ innehållsanalys användes för att bearbeta informationen.
Resultat
Analysen visade att flyktingar möter många fysiska och psykiska hinder i behandlingen, mest gällande smärta och somatisering men att de kunde uppleva en viss grad av bekvämlighet under behandlingen ändå. Förhållandet till fysioterapeuten, den psykologiska effekten av behandlingsmiljön och andra sociala faktorer var också viktiga.
Fysioterapi beskrevs ge positiv påverkan i resultatet av patienternas fysiska och mentala hälsa efter behandling trots utmaning från icke-hanterbara symptom. Flyktingarna kunde uppnå generalisering av deras fysioterapi till det dagliga livet som gjorde att de kunde hantera situationen själva till en viss grad och känna frihet från sina PTS symptom.
Konklusion
Studiens resultat går i samma linje som den tillgängliga litteraturen på effekten av att behandla flyktingar som lider av posttraumatisk stress med fysioterapi, inte bara för att öka den fysiska hälsan utan även för att ge mer vidgående holistiska förbättringar och
livskvalitet.
Nyckelord
Post-traumatic stress, refugee, physiotherapy, experiences
Table of Contents
1 Background ... 1
1.1 PTSD ... 1
1.2 Physiotherapy for patients with PTSD ... 2
1.3 BBAT and Mental health ... 3
1.4 Problem formulation ... 4
1.5 Aim and Question formulation ... 4
2 Method ... 4
2.1 Design ... 4
2.2 Sample ... 5
2.3 Data collection methods ... 5
2.4 Procedure ... 6
2.5 Data processing ... 6
2.6 Ethical considerations ... 7
3 Results ... 7
Category 1: Physical barriers to treatment ... 10
Category 2: Increased bodily comfort during treatment ... 10
Category 3: Psychological barriers to exercise ... 11
Category 4: Psychological impact of treatment environment ... 12
Category 5: Relationship to Physiotherapist ... 12
Category 6: Social factors ... 13
Category 7: Improved physical health ... 13
Category 8: Improved mental health ... 14
Category 9: Uncontrollable/Unmanaged symptoms ... 15
Category 10: Generalisation of physiotherapy ... 16
4 Discussion ... 17
4.1 Summary of results ... 17
4.2 Results discussion ... 17
4.3 Method discussion ... 22
4.3 Clinical discussion, ethical discussion and future research ... 23
5 Conclusion ... 25 6 Reference list ...
7 Attachments ...
1 1 Background
Patients who suffer from post-traumatic stress disorder (PTSD) often have both a range of physical and psychological symptoms that can qualify their condition for assessment and treatment by a physiotherapist (1). To be suffering from an unresolved traumatic event can give symptoms such as muscle tension, pain, anxiety and other physical and psychological distress signs triggered by overload of the nervous system because of strong emotions, feelings, memories, images or actual events of the traumatic episode (1).
One group that can suffer from PTSD are refugees as a result of traumatic events resulting in the refugee status. The 1951 Geneva convention is the main international
instrument relating to refugee law. It defines a refugee as "someone who has been forced to flee his or her country because of persecution, war or violence. A refugee has a well-founded fear of persecution for reasons of race, religion, nationality, political opinion or membership in a particular social group. Most likely, they cannot return home or are afraid to do so. War and ethnic, tribal and religious violence are leading causes of refugees fleeing their
countries” (2).
1.1 PTSD
The concept of PTSD is understood by health and medical personal to describe a state of anxiety, worry and reduced social function and/or reduced function in other key areas (3).
When a person suffers a trauma such as physical attack, or death, the person feels scared, helpless, disturbed or shocked. These psychological consequences can lead to the
development of PTSD (3). The fifth edition of Diagnostic and statistical manual of mental disorders (DSM-5) defines a traumatic experience as exposure to threat of death, violence, serious harm or sexual violence (4). This exposure can be actual or indirect by witnessing the event, coming into close personal contact with repeated details of such an event or by an event that happens to a loved one (1).
PTSD diagnosis requires a range of symptoms to exist for longer than a month (4).
These symptoms may include flashbacks, avoidance behaviours, negative cognitive issues and heightened states of arousal that may manifest both physically and psychologically (4).
There is a specific set of criteria for Post-traumatic stress (PTS) to be further diagnosed as PTSD. A refugee can be suffering from PTS without necessarily fulfilling all the criteria to be diagnosed with PTSD.
2 1.2 Physiotherapy for patients with PTSD
The current rate of refugees coming to Sweden has been at an all-time high in the years 2012-2018 (5). Assumptions can be made that because many of the refugees are coming from war-torn countries that there is a growing need for post-traumatic stress treatment.
Physiotherapy is one of a range of treatment options available for these individuals.
Somatic expressions of psychological trauma could be treatable with certain
physiotherapy methods, yet there is a lack of guidance relating to PTSD and physiotherapy specifically. General guidance relating to PTSD and other stress and anxiety related
conditions can be obtained from the Swedish agency for health technology assessment and assessment of social services (SBU) in Sweden (6). This resource gives evidence-based information mainly relating to psychological treatments for the condition but only
superficially contains details relating to physical treatments such as relaxation exercises for physical manifestations. There is no clear and specific authoritative guidance in Sweden on physiotherapy treatment for PTSD for refugees or other patient groups.
One of the few systematic reviews and meta-analyses available had looked at a total of four RCTs on the use of physical activity in treating PTSD (7). This included two studies which were focused more on yoga as an exercise and two others focusing on cardiovascular and resistance training. The meta-analysis concluded that physical activity was potentially helpful as an add-on treatment for PTSD sufferers although it also admitted that it is a wide and varied patient group (7).
Physiotherapy is shown to be a relevant treatment modality for patients with PTSD (7).
Similar small-scale studies have described PTS symptoms (8) and effects of treatment with refugees as the specific patient group (9-15). The fact that there is no specific guidance from the Swedish authorities is strong motivation to study the subject as an area of innovation in the physiotherapy field.
In 2015, The Swedish national board of health and welfare published a report into mental health amongst asylum seekers and newly arrived migrants in the primary care setting (16). It describes specific problems relating to this group, such as the migration progress itself being an additional stress factor, unaccompanied youth/child issues, torture experience and so on. The section of the report that relates to trauma and PTSD also
describes physical health problems that are both symptoms of the condition itself and are at
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risk of developing as a result. High blood pressure from stress and chronic pain are listed, for example.
The Swedish national board of health and welfare report contains information as guidance on diagnosis of the condition and psychological treatment. However, it lacks any mention of physiotherapy as a treatment method. In its descriptions the report itself recognises the problem of trauma and PTSD as a mind-body interaction issue (16). It might be logical to assume that physiotherapy can assist psychological interventions in giving a mind-body treatment solution.
As there are no formal specific guidelines regarding physiotherapy treatment for refugee PTS clients, the treatment methods are often linked to what is proven to be effective for treatment of similar physical expressions of psychological conditions such as anxiety, depression and long-term pain sensitisation. This is confirmed by the limited amount of literature relating to the subject (7, 9-15). The emphasis must be on the skill of the individual PTS physiotherapist to create a bespoke treatment individualised to patient need and relating to a limited academic evidence base.
A key physiotherapy treatment used with refugees suffering from PTS in addition to general physical activity is the use of Basic body awareness therapy (BBAT) or basal kroppskännedom as it is known in Sweden. In many studies, BBAT was either used as the main physiotherapy treatment (7, 9, 12-14) or as a control treatment (10).
1.3 BBAT and Mental health
BBAT is a holistic physiotherapy treatment with origins from eastern body movement
traditions such as Tai chi chuan, Zen buddhist meditation and the Feldenkreis method (17). It has been introduced and practiced in Scandinavian countries for more than 30 years (17- 18).
There are several studies that describe the use of BBAT to improve mental health (19- 21). Treatment with BBAT consists of simple movement exercises to achieve optimal movement dynamics with light, evenly - weighted motion. The movement exercises lead to physiological change in the human body - muscular tension, autonomic processes and general vitality being affected (21). To achieve optimal precise movements, the muscular coordination in the body must be functioning well and the training regime in BBAT is concentrated around balance, centre of mass, breathing, flow, normalised posture and conscious presence (20).
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Mattson & Matsson showed that BBAT as an add-on treatment could lead to a significant decrease in symptoms in patients who received treatment in psychiatric outpatient care (19). Another study showed that treatment with BBAT could lead to improvements in a range of both physical and psychological symptoms for psychiatric patients such as improved body awareness, movement awareness, self-efficacy, sleep and coping strategies with effects even remaining on 6-month follow-up (20).
1.4 Problem formulation
There is clearly a gap in knowledge in a newly developing area of the profession to be explored. Physiotherapy specifically for refugees suffering from PTS or PTSD is an area for potential development. There is a growing refugee population increase (5) with a need for post-trauma care as a result of flight from war and crisis. There is a lack of guidelines from the Swedish authorities as to how PTS physiotherapy should be delivered and yet many of these same authorities describe an associated somatisation of symptoms related to the condition (6, 16). There are limited studies in the field of physiotherapy relating to PTS and PTSD. This number is even smaller when relating to refugees as a subject matter.
Physiotherapy, including but not exclusively BBAT, has been shown to give positive results as a treatment method (7, 9, 10-15). Although the size and scope of studies in the field is limited, there is opportunity for the profession to develop and expand in this area as a compliment to a refugee´s psychological treatment. It is physiotherapy treatment for PTS that is to be studied with refugees being the specific population.
1.5 Aim and question formulation
The aim of the study was to investigate refugee experience of post-traumatic stress physiotherapy. In order to meet the aim, two key questions had been formulated to be answered:
1. What did the patient experience during PTS physiotherapy treatment?
2. What is the patient´s experience of the effect of PTS physiotherapy treatment?
2 Method 2.1 Design
An interview-based study has been chosen to answer the study questions. A qualitative explorative and descriptive design based on semi-structured interview will give the flexibility and depth needed to learn more about patient subjective experience. (As has been
previously described, the phenomenon of PTS physiotherapy in this context is relatively new
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to Sweden and to Swedish research). The purpose of a qualitative design is to ´give voice´
both to the patients´ experience and to the role of the PTS physiotherapist. A qualitative design can offer the ability to gain the depth of information that is required of a patients’
individual, subjective experience (22).
2.2 Sample
A treatment centre in Sweden had been chosen through convenience sampling. The
treatment centre had 30-40 active patients that were of interest to the study. Five refugees undergoing physiotherapy treatment at the centre were selected for the study. Strategic sampling was used to select appropriate patients to be interviewed from a patient list at the treatment centre (22). At this centre, physiotherapy treatment is given to a person who is suffering from trauma related to war, torture or difficult escape experiences.
The inclusion criteria included all refugee patients from the treatment centre of 18 years or older who were undergoing physiotherapy treatment for either PTS or PTSD. The included patients must have received more than five treatments in total. These may have been delivered at both an individual and a group level. All patients had participated in individual sessions and group activities which included hydrotherapy, group walks and group training sessions. BBAT was used both in group training and 1-to-1 sessions as the key
exercise modality alongside general physical activity. Demographic considerations were to include a balance between genders. In total there was two men and three women included.
The exclusion criteria excluded patients receiving their first treatment or patients who were in an early treatment stage. Patients who were suffering from severe mental health difficulties as a result of their trauma or patients who had other unrelated severe mental health problems were excluded. An overview of patient demographics is shown in table 1:
• Table 1: Patient selection and treatment participation
Patient 1 (P1) Patient 2 (P2) Patient 3 (P3) Patient 4 (P4) Patient 5(P5) Age 25-40 years 40-60 years 40-60 years 40-60 years 60-80 years Time in treatment 10 months
with a pause
2 years 18 months 18 months 2 years Group training 9 sessions 68 sessions 20 sessions 30 sessions 12 sessions 1 to 1
Physiotherapy
11 sessions 45 sessions 5 sessions 4 sessions 41 sessions 2.3 Data collection methods
The data was collected through five semi-structured patient interviews. The interviews were recorded to a sound file onto two electronic devices. The interview contained open
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questions relating to patient experience of treatment. The semi-structured approach allowed the flexibility for follow up questions and to allow a more in-depth interaction with the patients where appropriate.
2.4 Procedure
The five patients to be interviewed were chosen by the treating physiotherapist according to their lists and according to the inclusion and exclusion criteria. Prior to interview there was a small amount of background data discussed so that the interviewer was aware what
treatments the patient had received during their time at the centre.
The interviews took place in a separate room at the treatment centre. Specific time slots were in accordance with the needs of the participants. Interviews were undertaken in Swedish through an interpreter. Different interpreters for different interviews were chosen by the treatment centre according to the language requirements and interpreter availability.
The interpreter was also paid for by the treatment centre. The treating physiotherapist was made available in a separate room in the event of patient distress.
All five interviews were carried out by one of the authors with transcribing and processing being carried out in partnership. As there was a need for interpreter at all interviews it was felt that a single interviewer CB was better than two, leading to fewer people in the room during interviews where the patient may wish to discuss sensitive subjects. It was hoped that a separate perspective on meaning and interpretation of the interview content might also be gained from the non-interviewer BS during the processing stage.
2.5 Data processing
The analysis method used was a qualitative content analysis. The authors used a code and retrieve system to process the data. The code and retrieve system used was Opencode 4.03 from Umeå university (23). Each interview was first transcribed into in Swedish and then translated into English. Transcription included verbal pauses or small utterances such as ´uh´
or ´mmm´ to avoid losing meaning that might be conveyed when patients described their experience. The coding program was then used on the English transcription to generate common themes in order to present the results. Qualitative content analysis is used to focus on the subject and give context by categorising and coding any similarities and differences in experience (24). The results used actual participant quotes to give the reader an insight as to
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what was said or described by the patient themselves and how this led to common themes being understood (22).
One issue with sound recording was that patients occasionally used body language and gesture to convey meaning. The interviewer verbally described these occurrences for the recording as appropriate.
The coding process was carried out by the authors independently and then comparative discussions were held. The sorting and interpretation of the data were negotiated between any similarities and differences. This constituted one form of result verification. The presentation of the results included a reflective account of author
subjectivity and how the authors were affected by the study in order to enhance its quality (22). The study included triangulation by creating a comparative interpretation with the supervisor for the project. Any data that was found not to be directly relevant to answering the main study questions was subsequently disregarded. Table 2 shows an example of the coding process used:
• Table 2: Example of coding process
Text Code Sub-Category Category
It was due to high stress that I had no energy. I couldn’t even lift anything.
Lack of energy and condition
Difficulty with
exercise performance
Physical barriers to treatment
2.6 Ethical considerations
The study had verbal approval from the treatment centre by the lead physiotherapist and the treatment centre manager. The participants that were interviewed gave both their written and verbal consent to be interviewed. The written consent information outlined the purpose of the study and emphasised that the participant took part of their own free will and had a right to cease participation at any point during the time of the study. The relevant forms had been created both in English and in Swedish.
The interviews were confidential and took place in a separate room with the
interviewer and an interpreter. The interviews needed the assistance of an interpreter for obtaining consent and for translation during the interview itself. In order to preserve patient confidentiality, it was necessary to make anonymous both the organisation and the city where the interviews took place.
3 Results
The participants were three women and two men. All participants had been receiving treatment ranging between 10 months and 2 years. Participation included a mixture of
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individual sessions and group sessions. All patients had received a combination of both general physical activity and BBAT as physiotherapy treatments. Individual and home training exercises included a variety of exercises for muscle strengthening and relaxation, balance and posture as well as personalised exercises for specific problems such as massage, relaxation and breathing exercises. Many home programs also included exercises from BBAT.
The qualitative analysis led to the generation of 25 sub-categories. These sub-
categories were grouped into a total of 10 main categories - 6 categories relating to question 1 and 4 categories relating to question 2. The categories and sub-categories are then
described in the following text with the use of quotes where appropriate and the use of labels (P1), (P2), (P3), (P4) and (P5) which represent each of the five patients. Table 3 and 4 present an overview of the results for question 1 and 2 respectively:
• Table 3: Patient experience during treatment
Category Sub-category Code
1. Physical barriers to treatment
Physical symptoms during training
Physical pain during exercises Dizziness during breathing exercises Difficulty with exercise
performance
Maintaining a slow tempo is difficult Exercises are hard at first but get easier Lack of energy and condition
2. Increase bodily comfort during treatment
Reduced pain during treatment
Reduced pain during hydrotherapy Physical relaxation during
treatment
Reduced tension directly
Increased comfort Foot massage increases comfort 3. Psychological barriers to
exercise
Painful memories Memories of torture causing physical pain Reliving past experiences
Feeling imprisoned by PTS PTS attacks impair activity Loss of bodily control from PTS
Unpredictability of PTS attacks Reduced motivation Ambivalence to exercises
Easy to be lazy with home training
Somatisation Difficulty separating feelings and physical pain 4. Psychological impact of
treatment environment
Aesthetic experience Group walk outside was beautiful Stress reduction Background music was calming
Walking outside relieved stress
Fear Dim lighting can cause fear or flashbacks
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• Table 3: Patient experience during treatment (continued)
• Table 4: Patient experience of treatment effect
Category Sub-category Code
7. Improved physical health Reduced pain Muscle strengthening reduced pain Reduced physical tension as an effect Improved ability to be active Improved ability to move/exercise
Improved energy levels after treatment Improved condition/healthy weight loss Improved sleep Improved sleep patterns from treatment 8. Improved mental health Holistic improvement Physiotherapy made life better
Feeling liberated by physical activity Exercises as psychological treatment Mental Relaxation Reduced stress as an effect
Feeling rested by treatment Personal Psychology Feeling less depressed
Improved self confidence
9.Unmanaged symptoms Unmanaged pain Structural pain from torture not helped
“Berang” ** PTS attacks unaffected by treatment 10. Generalisation of
physiotherapy
Self-management Ability to recognise/manage symptoms Relaxation practice at home
Increased activity Increased physical activity day-to-day Breathing app enabled home training
*Physiotherapist is abbreviated as PT.
**“Berang” was a description given by patient 2. In Farsi, the translation would be colourlessness. This could perhaps best be described as close to a panic attack with very strong somatic symptoms. The patient would become pale, experience a gradual loss of control of her limbs as well as difficulty breathing. The patient experience that is captured here is of a state that was unpredictable and beyond his/her control.
Category Sub-category Code
5. Relationship to PT* Confidence in PT* Confidence in their knowledge Confidence in professionalism The personal touch Personal connection as treatment
Individualisation of treatment Room to speak freely
6. Social factors Access to support Economic pressure of training outside Feeling supported by the centre
Group training as support and motivation
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• Category 1: Physical barriers to treatment Physical symptoms during training
This sub-category describes that certain symptoms occurred during the treatment itself. A few patients mentioned some level of physical pain when performing exercises, especially in initial stages of treatment, which sometimes require a change in treatment strategy. One patient described: “For example, when I walk…If I do this, I get more pain in my knees and heels. That is why hydrotherapy is better for me” (P4). Dizziness was mentioned by another patient as a result of deep breathing exercises.
Difficulties with exercise performance
The performance of exercises themselves was frequently described as difficult at first but becoming easier with practice. Maintaining a slow tempo, as is particularly used in BBAT exercises, was highlighted by one patient as a challenge: “You have to be careful to do the exercise very slowly. It is not an exercise that you should do fast. It doesn’t work. You should take time with it” (P2).
Lack of physical condition or ability was identified in a variety of ways. This included difficulty with increasing joint range of motion, being overweight, previous inactivity or lack of cardiovascular fitness. These factors were also linked to a general state of low energy. The link between the manifestation of stress and lack of energy itself was even identified by one individual as a major barrier to treatment success. “It was due to high stress that I had no energy. I couldn’t even lift anything. It hurt (when I did the exercises)” (P3). Low physical condition was linked to levels of physical activity prior to treatment.
• Category 2: Increased bodily comfort during treatment Reduced pain during treatment
Reduction of pain during the treatment itself was identified and hydrotherapy was described as reducing pain during treatment sessions.
Physical relaxation during treatment
All patients described relaxation on some level during treatment and often this was expressed in purely physical terms. Described by one person as a during treatment experience: “(The exercise) really cured both the physical tension and the pain that I felt…and I felt it as soon as I did this” (P2).
11 Increased comfort
An increased sense of physical comfort was mentioned by patients in relation to the hydrotherapy and to foot massage, even during treatment.
• Category 3: Psychological barriers to exercise Painful memories
Described in this sub-category are barriers to treatment caused by memories of torture and reliving of past experiences that were a part of a PTS patient´s day-to-day reality. Pain caused by memories was clearly described by one participant: “When I think about all the torture I have gone through. I feel pain straight away as if it were happening here and now.
Then my general pain gets worse” (P1). This appeared to manifest even as a sensitisation on a physical, psychological and emotional level. Another patient attempted to describe this in general terms: “Everybody (at the clinic) is like me and are sensitive like this. It is like we are still children. If we had not become (sensitive) like children, then we would have all become mad in some way” (P5).
All patients described psychological suffering. Loneliness and depression were both described. A common term that came up was imprisonment or feeling imprisoned by PTS.
PTS attacks impair activity
PTS could also manifest as an unpredictable, acute attack that would cause loss of bodily control. This would impair one patient´s ability to be physically active and engage with treatment: “If I had an attack, I could not control my legs at all even when I sat down. It was as if I was paralyzed. You can’t feel your legs. You can't control anything in the body. You have no taste. I started vomiting. I even threw up. It was so strong that I couldn't sit” (P2).
Reduced Motivation
Ambivalence towards the effectiveness of certain exercises was mentioned which had an impact on motivation. One patient was more motivated towards group training at the centre because “at home it is easy to be lazy” (P2).
Somatisation
The difficulty of separating feelings, stress and psychological pain from physical pain was a common theme described by all patients as a barrier to treatment. One patient described:
“It comes from my psychological health, even when I have pain and hurt physically” (P4).
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• Category 4: Psychological impact of treatment environment Aesthetic experience
The importance of being outdoors was underlined in this sub-category. The weekly group walks were described as a “beautiful” experience (P1). The need to be outside and to appreciate that as an aesthetic experience was helpful in coping with stress.
Stress reduction
A clear link was identified between stress reduction and the treatment environment. This was linked to the group walk and walking outside as a home training. Calming background music was valued by patients as an aid to stress reduction at the centre and at hydrotherapy.
One patient was enthusiastic about this: “We go in warm water and we do the exercises and the physiotherapist plays different kinds of relaxing music. The music is good (to reduce) depression and stress. We are all (in the group) suffering from depression and stress” (P3).
Fear
One patient discussed personal difficulty with reduced lighting causing fear: “Personally, I am disturbed by the weak lighting here. Dark places remind me of the place where I was before and was tortured. This can affect me psychologically” (P1).
• Category 5: Relationship to physiotherapist Confidence in Physiotherapist
There were strong indications that the patients felt confidence in their treating physiotherapists knowledge of exercise and physical treatments. The scope of the
physiotherapists knowledge was identified by one patient as even being a “knowledge about our health both psychologically and physically” (P3). Confidence in the physiotherapists professional manner and being aware of patient needs was also highlighted.
The personal touch
The personalised nature of the treatment by the physiotherapist was valued by an
overwhelming majority of patients. Individual sessions were sometimes preferred for the extra attention that the patient could receive, although it was identified that
individualisation could occur during group training.
Interestingly, personal connection was identified by one participant as being part of treatment in and of itself: “If the chemistry is good between two people, then it is possible to feel better psychologically, and the pains can be reduced (P1)”. This seemed to point
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towards treatment as being far more than a purely physical treatment of the body but that the patients felt a genuine psychological/emotional connection too. This was described in a variety of different ways. One patient described the physiotherapist as fighting for them: “I know that the person sitting opposite me that that person is there to help me. It is for my sake that they fight. It is a need that you really have” (P3). Another patient also repeatedly described the need for the PTS physiotherapist to give from themselves. “…we sit together.
It feels like she will give us all the experience that she has. It feels like you are sitting alone and then someone comes to take your hand to help you” (P5).
The nature of trauma seemed to imply a definite need for regular individual
physiotherapy sessions so that patients could express themselves freely and in confidence.
• Category 6: Social factors Access to support
A general feeling of being supported by the centre itself was named in this sub-category.
Patients described that outside access to gyms could be difficult due to economic pressure.
Social support offered by fellow patients in group sessions was valued by many of those interviewed for a variety of reasons. For one patient it was as an aid to learning: “I learn in the group and then I do it at home. It has had a very good effect overall” (P2). For another patient it was as a social network: “I liked being in the group more (than being alone). We need to meet people and this social network. This is because we are in a country where we don’t have anyone” (P4). Another patient perspective was the value of group training in the therapeutic process: “In a group one feels that you are not alone. It isn’t just me and my stress and my difficulties. Then I know there are other people that have stress problems.
That helped a lot” (P3).
• Category 7: Improved physical health Reduced pain
Improved muscle strength was helpful in reducing pain symptoms. Physical training was linked to the reduction of physical tension in general which gave better outcomes for improved pain and pain experience. One patient summarized this as being inter-linked: “In my experience I now feel better in the body. All the pain, the aches and the tension. It has begun to soften” (P4). This was also linked to a sense of mental liberation or relief by
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another patient: “It has been liberating to get rid of (my pain) and I felt it as soon as I started doing this” (P2).
Improved ability to be active
Increased ability to be active is summarised in this sub-category but this is also linked to generalisation of physiotherapy in day-to-day life as patients were physically able to do more. Physiotherapy treatment enabled patients to increase their physical ability to perform exercises due to musculoskeletal improvements. This was contrasted by one participant:
“There were some exercises and movements that I couldn’t do before because of my muscles but now it feels that it is better in my body and I can do them” (P4). Physical condition was also improved, sometimes in relation to healthy weight loss but even described as an improvement in general energy levels as an effect of treatment.
Improved sleep
Balance, relaxation and breathing exercises were successfully used to help improve sleep patterns. This had a significant effect for one patient in particular: “I would do (the exercises) before I went to sleep. In this way, my body became tired and I could fall asleep without stress. I was so tired that I just slept …and that was good” (P3).
• Category 8: Improved mental health Holistic improvement
A holistic improvement in patient outcomes is perhaps one of the characteristics that is most striking in this study. Improvement of patient physical health, psychological and emotional wellbeing and even statements that are towards metaphorical/spiritual are described in this mixed sub-category. Quality of life was improved overall for one individual: “The treatment that I have received here. It made all the moons that I had in my life disappear…. I am trying to describe that it has been better in my life. My whole life has become better… All the exercises that I have done here. Yoga or hydrotherapy. Everything is linked to life. It is not just the body. It is from the inside as well. From my soul” (P5).
A meaningful and powerful effect of treatment has been a feeling of being liberated by physiotherapy and this came up in a variety of interesting ways. A wider sense of liberation by physiotherapy was described by one patient profoundly: “It´s like one is in prison. That you are stuck in a confined space and you exist there. Yet, even in prison one can use these exercises. These exercises that I have learnt. Then I begin to feel that I am not quite so imprisoned. One begins to feel that: my body is free, my body has energy…and you can do
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these things in this confined space. It is possible to do them anyway. Once you have the physical activity started. Then you can begin to feel that you are not in this prison anymore”
(P3).
Physiotherapy was advocated by many patients as being a viable alternative for medical treatment concerning psychological health. One patient strongly emphasized the need to recognize the curative or healing effects of physiotherapy. “I am so much better with this physiotherapy (treatment). It is medicine in the form of physiotherapy. It is a medicine. One needs to encourage other people to take this medicine and use it. One must think that this is medicine on a physical and every other level” (P3).
Mental Relaxation
A feeling of relief from stress or stress reduction was described by all patients. Amongst other treatments, hydrotherapy was popular for achieving this. Linked to this feeling of relief was also a feeling of being rested from the stress.
Personal psychology
Improvements in depression were linked to the physiotherapy treatment but also to the combination of treatments at the centre in general. As the centre includes conversational therapy and other psychological treatments, it is interesting to note that physiotherapy was even identified alone as a single decisive factor in improving psychological well-being.
Improved self-confidence was also mentioned directly in relation to physiotherapy and motivation to increased physical activity.
• Category 9: Uncontrollable/unmanaged symptoms Unmanaged pain
Despite successful treatment of pain in many areas, one patient felt that there had been limited success in treating their musculoskeletal pain as a result of torture: “I can relax in my body which is good…The negative is that the pain is still there. Which is evidence that the exercises haven´t given the best result” (P1). The patient was still undergoing active physiotherapy treatment but had been advised by doctors that some of his/her pain symptoms might need to be managed rather than cured.
“Berang”
Another patient experience was of acute attacks of symptoms, perhaps closest to a panic attack, that would include somatisation of psychological symptoms. The patient described this as “Berang” or colourlessness from the Farsi interpretation. The patient would lose
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control of his/her body in a way that was uncontrollable and unpredictable: “The "berang".
When it comes, it is out of control. When it comes, you can't do anything to stop it coming”
(P2). These attacks, whilst recognised as not being caused or worsened by physiotherapy treatment, seemed to be unaffected by it.
• Category 10: Generalisation of physiotherapy Self-management
All patients appeared to have gained the ability to recognise their symptoms through the treatment process and self-manage to a certain extent. Self-management included a
knowledge of differentiating exercise selection according to the symptoms experienced. This can be assumed to be as a result of patient education. Learning to listen to the body was highlighted by one participant as a part of enabling self-management “The physiotherapist is teaching us to the listen to the body, to ask myself have I got energy for this or not? It is that that he/she is trying to teach us” (P4).
Relaxation at home and creating a relaxing home environment was also emphasized by another patient for enabling stress management: “The physiotherapist had given me an exercise “Me time” and that meant setting aside time just for me. During this time, I would only lie down, listen to relaxing music and think about myself, just relax and be without stress... I had to really devote that time to myself. I had to be focused. This is my time….
When I did that, then it began. I really could get rid of a whole hour of stress (by myself) and that was great” (P3).
Increased activity
Physiotherapy enabled the patients to increase physical activity in day-to day life, including joining a gym and training independently or buying exercise equipment to continue at home.
All patients describing some form of home training by themselves. This would incorporate a lifestyle change and orientation towards increased physical activity. For one patient this would mean keeping active in general: “What I have taken with me is not to neglect the body. To move as much as possible and not to sit still for too long and to rest when I feel it will be too much and if I have pain or if it hurts” (P1). The use of digital technology to enable home training was also mentioned in relation to a mobile phone app for breathing exercises.
17 4 Discussion
4.1 Summary of results
The specific questions to be answered were refugee experience of physiotherapy during treatment itself and the effects of that treatment. The analysis of the interviews has led to 10 categories that summarise this complex subject. Patients experienced both physical and psychological barriers to treatment with a dynamic interplay between those two categories, especially in relation to pain. Yet there was also increased comfort during treatment itself.
The psychological impact of the treatment environment was described and the relationship with the treating physiotherapist was deemed to be of vital importance with this connection was even named as being a treatment in and of itself. Sometimes treatment was preferred to be delivered at an individual level. However, patients were also very positive about group training and the social support that would give. Social factors also had an impact on patient experience.
Effects of treatment included improved physical and psychological health including reduction in pain, increased ability to move, improved sleeping patterns and general holistic improvement. Reduced stress alongside reduced depression were also described. Being
´liberated´ from PTS seemed to include a mixture of personal, physical and psychological factors that gave patients a renewed sense of freedom. Generalisation of physiotherapy included increased activity, self-management of symptoms and integration into day-to-day life of the treatment methods. Sadly, a few patients actively receiving treatment outlined unmanaged symptoms that still felt unreachable through physiotherapy at time of writing.
4.2 Results discussion
Physical and psychological barriers to treatment, psychological impact of treatment environment and unmanaged symptoms
A key physical barrier to treatment was physical pain experienced during exercises and patients could all be described as chronic pain patients at least at the beginning of their engagement with physiotherapy. The dynamic interrelationship between PTS and pain was a key theme across several categories and was relevant to both study questions. Higher incidence of pain, muscle tension and even restricted breathing, amongst PTS/PTSD refugee patients are confirmed by one study that described common symptoms amongst the patient group (8).
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Difficulties with exercise performance and dizziness during breathing exercises may be linked to increased muscle tension and restricted breathing (8). Another study confirms that hyperarousal, chronic muscle contraction and unnatural body postures can be a contributor to physical difficulty (11). It is not surprising then that PTSD patients were found to be more restricted in other movement indicators such as stability, flexibility and coordination (8) and consequently experience difficulties in exercise performance.
Mutual maintenance model (25) is viewed as being highly relevant to the results especially when considering physical and psychological barriers to treatment together. The model describes a concurrence of both chronic pain and PTSD. Psychological distress is caused and maintained by the PTS state with further interrelated consequences for pain and disability. The model summarises a variety of factors that affect the interrelationship
between chronic pain and PTSD including attentional biases toward perception of threat, anxiety sensitivity, reminders of the trauma, avoidance behaviours, depression and reduced activity levels amongst others (25). Anxiety sensitivity was clearly alluded to by the patient who described themselves and their counterparts as having become “sensitive like children”
as a coping mechanism. Pain is perceived by the body as a threat, the person is already hypersensitive to threat as a result of trauma and the experience of that pain is even amplified by the same sensitivity (8, 25). Reminders of the trauma can be said to have been triggered as a psychological impact of the treatment environment by the patient describing dim lighting causing painful memories of torture.
This study also shows that treatment environment can also be used positively during treatment with stress reduction from relaxing background music. Music has previously been demonstrated to positively affect the limbic and para-limbic areas of the brain leading to reduced stress and hypervigilance amongst trauma patients, although more research to link music therapy specifically to the refugee patient group is needed (26).
The psychological barriers to exercise category contained a variety of descriptions relating to memory and somatisation. The mutual maintenance model describes that
traumatic memories may be both disorganised and fragmented as a coping mechanism (25).
This may explain why different patient PTS symptoms, memories and reliving of experiences were varied in their expression between patients; One patient experienced a chronic reliving of physical pain when he/she remembered their torture. Another patient experienced the more acute loss of control and the frightening “berang”. This has been documented in other
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patients as being intrusions caused by flashbacks that are uncontrollable (11). In general, all patients experienced a difficulty separating feelings, stress and physical pain. Painful
memories coming to the surface in a variety of different ways with different symptoms expressing in the body-mind.
The complexity of pain and somatisation in PTS patients may go some way to
explaining why symptoms are experienced as unmanaged symptoms even after long-term mixed physiotherapy and psychotherapy treatments. One study identifies that PTS and especially torture patients often have specific injury challenges and disabilities caused by torture practices, unresolved pain or even pain that may never be resolved is one of these potential difficulties (8).
Decreased physical activity levels is also described by the mutual maintenance model (25) and so physiotherapy can certainly be one way to help patients rehabilitate through increased activity. However, physical sensations associated with exercise such as increased heart rate, muscle tension or pain can often be affiliated to feelings of distress or fear (11).
In this way PTS physiotherapy is a form of gradual exposure to these sensations and so must be carefully delivered. Helping patients that have difficulty separating feelings from physical pain is one aspect of the role of the PTS physiotherapist.
Relationship to physiotherapist
The individualisation of treatment was acknowledged by patients as being possible in a group setting but best delivered on a one-to-one basis. One advantage of using BBAT is that exercises are easy to adapt according to individual patient need (13) and might explain why it was frequently used both in group training and 1-to-1 sessions at the treatment centre.
The importance of tailoring treatments to patients needs is known for refugees with PTS and similar patient groups (14).
Individual treatment was also highlighted as an opportunity for attention and connection in the patient relationship to the physiotherapist. The feeling that the physiotherapist is with the patient in their struggle, a high level of professionality,
competence and support have all been identified as necessary to good interaction in a study looking at communication, physiotherapy and torture patients (27). The need for deeper confidence and freedom of expression in interactions have also been previously described and are confirmed by the results in the current study (27).
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Personal connection as treatment was a code under the relationship to physiotherapist category. This was not found to be described separately in the literature in and of itself.
However, another study highlighted general interpersonal factors such as connection, physiotherapist understanding and sensing of the patient as important (9). Empathetic support offered by the physiotherapist was clearly valued highly by participants.
Interestingly, not too much was mentioned about physiotherapist instruction in this study in contrast to a similar study (9). This may be related to the treating physiotherapists expertly treating in accordance with the BBAT approach. In the BBAT approach, the
physiotherapists role is to guide the patient in an educative and explorative manner (9, 13) to listen to the body and optimize self-management as opposed to merely prescribing, instructing and correcting exercises. One might describe the approach as optimizing patient independence and empowerment even during treatment.
Social factors
Patient access to support for increased physical activity was recognised as being well- delivered within the centre but more difficult outside of it. Patients were positive about group training sessions, the hydrotherapy and the group walking activities offered by the centre. Issues were not raised regarding fears or anxieties of being in a group setting which has been mentioned in a previous study (13). However, this may be to do with the fact that all patients in this study had been receiving treatment over a longer time. The previous study discussed initial discomfort with group training that led to higher acceptability at a later stage (13).
Previous studies have also highlighted the need for gender separation in group training (13-14, 27). All training at the centre is separated by gender apart from the group walks and was not discussed as an issue.
Interpersonal support and a general positivity towards group training was emphasised by both male and female participants. The literature confirms the feeling of not being alone with PTS was important (13). A case-study relating more specifically to physical training also confirms the findings of group training as a motivation, a resource for creating a sense of belonging and a counter to feelings of loneliness and isolation (11).
Improved physical, mental and holistic health
Reduced pain and physical tension were often mentioned concurrently as effects on improved physical health. Patients seemed to be very aware of their bodies and their
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physical state as a result of training. BBAT has been described as facilitating this (12). An improved ability to be active can also be linked to BBAT as well as engagement with physical training in general (11-13, 15). Reduced pain as a treatment effect is described by the literature either experientially or measured by pain scores (11-13).
Improved mental health as an effect of physiotherapy was recognised by many patients and the literature confirms similar descriptions relating to better sleep quality, a break from negative emotions and the learned ability to handle stress and anxiety (9). This might also be linked to other psychological effects described in this study such as improved self-confidence, energy levels and feeling better rested. Overall an increase physical activity level has led to refugee patients feeling less depressed (11).
Feeling liberated through physical activity is possibly unique as a coded description found in this study but is close to holistic improvement-related descriptions of obtaining peace of mind and body (9). A holistic improvement in life quality and overall function has also previously been linked both to BBAT (12) and to sport and exercise (13) as treatment approaches. Mastery as a concept is described as the self-efficacy gained over physical skills (11). However, liberation as described in this study is understood to be a wider sense of emotional, physical, even metaphorical/spiritual freedom of the individual from their trauma.
Dropsy described three different levels of effect of BBAT treatment on the mind/body (21). The level of the self and the need to re-orientate to the physical body. The level of orientation to time and space or to be ´in´ reality. Then the third level as the need to be in contact with others (21). BBAT is shown to be effective at helping to achieve this in PTS sufferers according to smaller scale studies (9, 12-13). However, one case study has shown that this kind of effect has been achieved through general sport and exercise as the main treatment modality as well (11). The current study confirms that a mixed-modality approach of physical activity and BBAT has to some extent been successful in achieving these
combined aims, over a longer period of treatment.
Generalisation of physiotherapy
An improved ability to be active described under improved physical health also enabled patients to then become more independent in their daily life through generalisation of physiotherapy. This is important as high compliance both in treatment and home sessions is recognized as increasing the effect of BBAT (13).
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The experience of being at the centre, engaging in physical activity there, feeling supported both by the physiotherapist and by other PTS sufferers has been identified in this study as enabling motivation to training. Motivation to training is a key determinant in compliance identified both in this study and in the literature (11).
The ability to recognise symptoms and self-manage has been described in similar studies as learning to listen to the body (12-13) and then to be responsive to this (13).
Patient independence and empowerment might be understood as being entrenched in the PTS physiotherapy treatment process. The limited extent of research means that less has been written about PTS patients who are close to discharge as a specific group. Two of the patients in this study might be described in these terms. Common to their experiences was a shift in physical capacity to be more active, a high level of self-motivation to physical activity, self-awareness of both mind and body and an ability to adapt training to personal need. This is line with the sense of mastery that is described in the case study (11).
4.3 Method discussion
One of the weaknesses of the study concerns language and translation. An interpreter was needed at every interview which meant a third person was always present in the interview room and that all questions and answers went through an intermediary. Interviews were interpreted in the first instance, recorded and transcribed in Swedish from each participant´s native language, usually Arabic or Farsi. The transcriptions were then interpreted to English by one of the authors before being coded. This meant that meaning and context could be lost at two levels, both from the native language to Swedish and from Swedish to English.
The translations were made by the author CB, who had English as a first language and Swedish as a second language. These translations were agreed with author BS, who had Swedish as a first language and English as a second language.
Many category changes were made by the author CB after the first round of coding by author BS. Author CB conducted the interviews alone to reduce the presence of too many people in the room with the patient and the interpreter at interview stage. Some degree of category adjustments in the second round of coding confirms the perspective that in-depth familiarity with the data and the subjects affects interpretation (27). This is both positive and negative, author CB´s subjective view undoubtedly affects the process as a potential bias.
However, there is the benefit gained of the in-depth knowledge of the data and patient perspective overall as the same author performed all the interviews.
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The triangulation process has meant that the final categories were negotiated between the authors and the supervisor. The coding information and interview
transcriptions were available to all three during that process. So, the decision pathway was checked and discussed with each author involved (28). All professionals involved in the project are from a physiotherapy background and this should be accounted for when reading the study.
The design of the study did not isolate BBAT from more general physical activity and so it cannot indicate preference for one treatment approach over another in applying the results. It is also important to consider that the study does not separate physiotherapy from psychological treatment as these treatments are used concurrently with PTS patients at the centre, although patient quotations do provide evidence that physiotherapy is valued highly in and of itself.
Transferability of the results to other groups may be questioned particularly when considering refugee background. Although the refugees may have been through similar trauma experiences such as rape, war or torture, they are clearly not a homogenous group.
Differences in religion, language and culture from each individual refugee´s country of origin as well as personal qualities are highly likely to affect communication, expression of emotion and engagement with treatment. This is confirmed by one study that has focused on
physiotherapist interaction with torture victims (27). This study can demonstrate general trends in physiotherapy experiences for refugees suffering from PTS but it cannot control for variations between culture and background between groups.
The strengths of the study are that it could be replicated easily, asking open-ended interview questions gave a lot of nuanced, experiential information and patients did seem to be very open and honest in their answers. Information was gained on incidences where physiotherapy was felt to be ineffective and a great deal of insight was gained into the day- to-day struggles of the PTS patient. Frequent use of quotations from the participants can be another resource for credibility as the patient´s own words were used to illustrate
experiences (22, 28).
4.4 Clinical application, ethical discussion and future research
The clinical application of the study is to give both attention and insight into PTS
physiotherapy as a developing area in the profession. In practical terms, this can assist the therapist in delivery of treatment through increased understanding of patient experience.
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The study results present some of the key challenges to treatment both physically and psychologically and how patients are affected by symptoms during treatment. This can lead to the development of treatment strategies and planning to overcome these barriers.
The study describes the importance of the role of the patient-therapist relationship and how this is experienced by PTS patients. Understanding this will help assist the clinician in developing interpersonal communication and interaction necessary to enable successful treatment.
The study describes some of the main treatments that are currently being used, namely a mixture of general physical activity and BBAT, it describes how patients experience effects and the importance of the treatment environment. It is also demonstrated that treatment is continued outside of the clinic through home training and patient
empowerment can be experienced through an ability to self-manage symptoms. It cannot evaluate the effectiveness of those treatments in a wider clinical context.
An important ethical consideration was to try to understand the experience of the PTS patient without provoking traumatic experiences. It was for this reason that focus was weighted more towards experiences during and post treatment as opposed to background and pre-treatment. The treating physiotherapist was made available in a separate room in case of patient distress during the interviews but was not required.
Patients described many positive experiences both during physiotherapy and as an effect of physiotherapy at interview. This process might be of value to the participant as self- confirmation of their own physiotherapy and personal progress or as motivation to continue physiotherapy. Many participants had also stated, either at the end of interview or after recording had finished, that they wished to help other people in similar situations to
themselves through their participation in the study and described their reasons for agreeing to participation in these terms. All participants stated a desire to support either the work of similar treatment centres or similar physiotherapists via participation. This information was not categorised as it was not of value to answering the study questions but is stated here instead in respect to these altruistic intentions.
There is a clear research need for an evaluation of BBAT and physical activity as a treatment for PTS. Promisingly, the protocol for a large scale RCT has been written and undertaken and results are expected to be published in the future (10).
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Other suggestions for future research would be to focus on a wider selection of patients. It would be interesting to look at younger refugees with PTS. This group was not represented in the current study but the challenges facing unaccompanied children and young people suffering from PTS would highly likely be different to those for adults and of interest to the field.
Taking a wider societal perspective, the treatment of refugee patients suffering from PTS is arguably a challenge to be met for successful integration. Recovery from PTS
empowers the individual not just to engage with physical activity. It also increases their opportunity within society to contribute positively. There is clearly a need for further research to establish guidelines from authorities and further develop treatment approach.
5 Conclusion
This study has given an account of patient experiences during treatment and experienced effects. It has highlighted both physical and psychological barriers facing patients including the interaction of pain, PTS and other forms of somatisation. It confirms the interaction of social factors with a need for good communication, professionality and patient interaction in the relationship to the physiotherapist and the usefulness of group training as a resource for interpatient support. Increased bodily comfort was experienced during treatment by some patients and treatment environment also had a psychological impact.
Despite many challenges and certain unmanaged symptoms remaining, holistic improvement and improved life quality was named in a variety of ways as a result of physiotherapy and BBAT. These include the interaction of improved physical and
psychological health and those two interactions were most powerfully named by longer term patients as a feeling of liberation from the prison of PTS. The importance of
generalisation of physiotherapy skills into everyday life was underlined by all patients. This led to an ability to self-manage symptoms and increase activity independently.
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